Fibromyalgia Support Group

You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.

4,403 Members
50,124 Posts
1 Online
Muscles & Bones
/ Fibromyalgia Support Group

conflicting diagnoses

flawdnotclawd
flawdnotclawd
I was diagnosed with just fibromyalgia over 20 yrs ago. Recently have had a bad flare and went to a new rheumy. She said I have fibro and arthritis, maybe also mild mctd. Went to another rheumy who said no mctd, but maybe fibro and CFS. Went to an osteo who said I have chronic yeast causing all these dxes. Went to another rheumy who said just fibro no such thing as CFS. Went to a neuro who said never was fibro or CFS. I have Ms....maybe. Mri's show plaques but that could be from many other things. Now scheduled for a second neuro opinion. Has anyone else had this kind if diagnosis confusion? I don't want to start a heavy duty auto immune med with bad side effects unless the dx is really definite. Help!
AnnNY
AnnNY
Yes, I've been going through this for 35 years. I went to a new rheumy some years ago, and said I had fibro, although I'd been treated for lupus in the past. She put me on a prednisone trial. It was 20 mg for 4 days, 15 mg for 4 days, 10 mgs for 4 days, 5 mgs for 4 days and off. Practically, all my pain went away. But had she taken my bloods, I doubt she wouldn't have found nothing amiss. What I have found is I have the history of someone with lupus. I respond to Plaquinil which is the safest drug, with the fewest side effects for many autoimmune diseases. However, it takes a long time to fully kick in. If you are confused maybe you could go to the most sympathatic rheumy and ask for a prednisone trial. (Shorter trials don't work for me.)

Also, there is an autoimmune disease that can look like MS, but isn't MS. It is called antiphospholipid syndrome or Hughes syndrome. Check out this website and make sure you have had all of the tests for it:

http://www.hughes-syndrome.org/

Yes, I also have been told I had MS. Dr. Hughes believes there is a seronegative APS, but they don't believe that in the US.

I have had to really find rheumies who will listen carefully to my history and how I have responded to meds. But I still don't have a definite diagnosis. Right now they are saying I have lupus like UCTD.

But I'm being treated. I wonder if I'm going to die without a definite diagnosis.

But taking prednisone for a short time isn't particularly dangerous and you can get a quick answer to whether you have an inflammatory disorder. You can also take plaquinil, but may have to wait up to a year to see how it effects you.

Good luck.